To My Son, With Love

 

By Blog Director:Marcielle Oppenheimer

 Originally my post was going to be about my struggles with giving up a piece of my identity, by changing my last name.  I am using a service from missnowmrs.com and wanted to share my experience, but with my son turning four this month, I found myself with the urge to push that post aside (for now) and swap it for this post.  If experience stories with positive outcomes are not something you like to read about, please come back next month.  For now, it’s NICU, Noonan Syndrome, and Mic-Key button time.

Watching my son grow from a tiny baby boy to a loving, laughing, thoughtful, and squishable little boy has been quite the adventure.  In the funniest of “creepy mom1” fashion, I watch this life-changing angel sleep at night, thanking GOD for this blessing in my life.  I have many creepy mom pictures to show for it too.  I am sure there are many of you out there who understand these creepy mom moments.  I never knew that being a mom would be such an emotional roller coaster. 

I dedicate this post to my son, Maddox, and to any of you who have had similar experiences.  I can relate to your laughter, your tears, and your love.  Here is our story (the short version).

Like most moms out therephoto 1, I had a plan for the birth of my son.  I was told to write my plan down and throw it out because almost no births go according to plan, but like most moms, I thought I would be different.  I had the dream all laid out; a beautiful birth-center birth, a midwife, a doula, no medication, the love of my closest friends and family, then go home and enjoy the rest of my life with my new baby.  Holy WOW was I off!

After 38 hours, which included a hospital transport, I gave birth to my son.  My plans for a birth center birth were pushed aside by what I like to call, “The Hand of GOD.”  Turns out my son had something going on with him that, had we gone to plan, might not have been caught until we were in a sticky situation.  Initially the doctors did not know what was wrong with him; Maddox was born with a mild version of Noonan Syndrome, which for him, included a Pulmonary Stenosis and failure to thrive.  Immediately after birth, he was taken to the NICU because he needed a little help breathing, two months later we were released.  Oh how frustrating and painful that experience was.

Every day for two months, my husband and I sat by our son’s bedside.  I was barely eating, definitely not drinking, barely sleeping, and I was stressed to the max.photo 2  I would try desperately to nurse Maddox but he would barely eat and, because of this, he had to be given a feeding tube.  It was maddening trying to get Maddox to eat enough on his own, only to be told time and time again that he is not doing enough to sustain himself.  I never knew I could cry so much.  Here he is, a piece of my heart come to life, and I cannot take him home with me.  I could not do anything to help him.  I felt like a failed mom and I hadn’t even been a mom for very long.

The alarms that constantly go off in a NICU can drain your energy too.  There are alarms for when Maddox would experience a “Brady episode” and there were alarms for when his feeding from the pump was complete.  There were alarms for this and alarms for that, alarms for Maddox, and alarms for the neighboring NICU babies.  Alarms, alarms, alarms; each one sucking the energy from your body.  Each one leaving you wishing that you could steal your baby and run home.  That’s right, STEAL YOUR BABY.  I wanted to grab Maddox, put on a harness, and rappel out of the hospital windows like an Australian Commando.  Then our purpose for being there appeared.

I am not a “force my opinion onto others” religious person.  I believe in GOD and I believe in the science that GOD leads us to; so when I say that the hand of GOD appeared to us one day, I am not offended if you want to call it something else.  For me, the hand of God came in the form of a doctor.  One of the top geneticists in the world happened to be covering rounds for another doctor on the day she was brought to us.  After weeks of not having a clue, Dr. Zadeh looked at Maddox photo 4and knew what to test him for, Noonan Syndrome.  All the tears, the wondering, the waiting, all came to head and we finally had our answer and it gave us a peace of mind that we had been missing.  Now that we knew what was up we could move forward.

After battling with the decision to have a G-tube implanted into our son to help him eat, my husband and I gave the doctors permission.  Our exhausting time in the NICU had come to an end due to this implant, and we finally went home.  We knew at one point we would be back in the hospital for heart surgery, but that was a worry for another time.

I am so proud to say that Maddox is now an awesome four-year-old boy.  Looking at him and watching him you would never know that he had anything going on with him medically.  We just passed an AMAZING milestone for our family; Maddox is no longer using his feeding tube.  For my sons fourth birthday we were given the approval by his doctor to let him consume all of his food orally.  He has really pushed himself to eat (even though we have to stay on him sometimes) and his efforts have finally paid off.

“To my son Maddox, with love; I give you a piece of my heart, a piece of my mind, and a piece of my soul.”  When I look at this beautiful boy, when I breathe him in, hold him close, and stare at him in true crazy mom fashion, hug him, and love him, those are the words I think to myself.  My little baby is now a boy and one day will be a man.  I am so proud to call him my son.

1Definition of a “Creepy Mom”: Funny term used for moms who stare at their sleeping children.photo 3

Want to get to know me better?  You can find me here:

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Leave A Reply (1 comment so far)

  1. Francielle
    Francielle
    2 years ago

    Experiences happen, sometimes they could be the hardest experience! It’s not what happend to you but how you handle it and allow the world in so you can spread your outcomes and strength! Amazing blog post! Grab a tissue! I sure needed one! Admire you Marcielle Oppenheimer​! xo

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